My mission statement

The times we are working in now need a great deal of accelerated change and there must be no negotiating that down. So my mission statement for this part of my consultancy career is to be clear that there needs to be and will be a lot of change from the work that I do with individuals and organisations and if organisations don’t want that, then it is probably best to go somewhere else.

Read my statement in full »

People powered health and patient coordinated care

Filed Under (Health Policy, Patient centred coordinated care, Patient Choice, Patient involvement, Self Management) by Paul on 20-03-2014

I know it doesn’t feel like it in 2014, but the dynamics of disease will move the NHS into an era which will either fully utilise patients and their carer’s capacity to better self-manage their conditions – or collapse.

The old model of healthcare will not be able to muster sufficient resources to cope with the new model of disease.

Moving from here to there will be difficult, with many fits and starts, but patients and their organisations will be the main force that will drive this change.

That’s why yesterday I posted that too much of what is at the moment called “integrated care” is simply shuffling existing services around and hoping they will fit.

They don’t.

Given the multiple morbidity of many patients it will take much more than this to create care that is properly coordinated.

Above all it will need investment in the assets that patients, their carers, families and communities have to better manage their conditions.

This process starts with a very difficult set of changes from inside the existing model of care.

At the moment many medical staff, seeing a list of sick people – some of them very sick – fairly inevitably see their patients, carers, family and communities as a set of deficits. Patients are seen as lacking average blood pressure, good breathing, the ability to be active in the world, the ability to manage their condition themselves etc. etc. Patient after patient comes in expecting some external help from the doctors and the nurse.

This experience makes it fairly likely that the tenth person who comes into the clinic will be seen as a set of needs – and not as having any assets.

Which of course becomes a self-fulfilling prophecy. The NHS sees no assets amongst the patients and the patients therefore don’t feel, when they come into contact with the NHS, that they have any.

But if we continue in this way, treating patients as if they are nothing but deficits, the health service collapses under the weight of demand from co-morbidities and an insufficient supply of medical staff kit and drugs.

Finding out what assets people have is not a straightforward process. Different people have very different assets.

Many people have family and friends who can do much more than take a prescription to a chemist. But to do more they need some investment of time and effort from the NHS. Helping people to play a bigger role in helping other people first requires the recognition that there is something there to work with and then some time and effort to help them know how to improve the patient’s capacity to self-manage.

But others – the very old and the vulnerable – may be very isolated and have lost all their organic relationships with family and friends. Here the NHS needs to find ways in which local voluntary and community groups can stand in.

Last autumn the Red Cross fundraising campaign had a picture of an isolated older lady at home in this country. This, not the health outcomes from an earthquake in another country, was ‘the crisis’ that the Red Cross was pledged to help to solve. For some years now the Red Cross have been training volunteers to spend time with isolated patients.

Of course they are not alone in this.

Organising someone to visit an otherwise isolated person is not something that a busy GP can take on board themselves. It may only rarely make sense for a doctor to find out about all the voluntary groups in their area, but it always makes sense for them to have someone who knows to whom they can refer the patient. This practice of social prescribing is gaining recognition within the NHS.

If the increase in the number of people with several long term conditions is the disease burden with which our health and social care service needs to cope, then my point is that the only way that this can be done successfully is with the very active management of patients themselves.

Changing health and social care to achieve this will not be easy.

Last year, before I suspended blogging, I posted about the work that I and others had carried out with NESTA. There are several publications on their website that flesh out how investing in better self-management can work for the NHS.

Creating patient centred coordinated health and social care isn’t just a matter of bringing existing services together.

Filed Under (Health Policy, Patient centred coordinated care, Patient Choice, Patient involvement) by Paul on 19-03-2014

Across various parts of social care and the NHS the last year has seen a great deal of planning to create what the NHS and local Government likes to call ‘integrated care’. (I commented yesterday on how providers of care like to call it this whilst patients like to talk about ‘co-ordination’).

Across the country, there are regular meetings where teams of people are sitting down and looking at their existing services and trying to stitch them together into a different pattern.

Over a year ago I tried to understand why this was so very difficult. Staff wanted to do it; patient’s carers and the public wanted to do it; resources were demanding it. But, meeting after meeting, it kept on not happening.

My answer to this conundrum is that we underestimate the passion with which staff and services have developed their fragmented bit of the whole. More and more people come to work in health and social care with greater and greater specialisation in their work. Most careers have been developed not around better coordinated whole person care but around greater specialisation.

Two weeks ago, tucked away in John Oldham’s report on Whole Person Care was the recognition that the way in which merit awards were granted to the medical profession not only encouraged but practically enforced body part care rather than whole person care.

In the field of social work, despite several decades of argument for generic social work, specialisation is how you get ahead.

Of course staff don’t come to work with the aim of fragmenting a person’s care. They come to work with the experience of working only with diabetes; only with residential homes for residents with dementia, or only with depression. The constant in their work is the specific illness – the variable is the human being.

And it is not wrong to describe staff as ‘passionate’ about their specialisation. Hearing specialist consultants, nurses, or residential social care staff talk about their specialism is a moving experience. They really want to improve their skills but talk about more and more specialist activity.

This process has created passionate fragmentation.

And there are very many who believe that coordinated or integrated care will be created if we bring these fragmented services together. Rather like a jigsaw puzzle. So the job of the coordinated care officer is in some way to find the picture on the top of the box and fit all the pieces together.

It’s a compelling analogy – but it doesn’t work.

The jigsaw takes an existing picture – let’s call it “Whole Person Care in the Home”, cuts it into bits, and then jumbles those bits up. The coordinated care person a) knows that somewhere in all the bits there is a real coherent picture and b) that whilst it will take time and effort their job is to fit the bits together to make that picture – and given time and skill that is what they will achieve…

The problem for real coordinated care is that the fragmented services have NOT been created as a single picture and then fragmented. They have been created to only deal with bits. They have been created as fragmentations.

The big problem is that the part of the jigsaw for an 85 year old woman called “diabetes care” has not been created to fit  neatly with the part called “dementia home care”, which in turn has not been created to fit with the part called “COPD care”.

They have not been created in a way that they will fit together.

The organisations that create them have made these services as “bits” in their own right.

So a really clever coordinated care worker can shake all the pieces out of the box for Mrs Patel’s whole person care and then find that the problem is that when they try and fit them together – they won’t. They were not made that way.

At best they might get a few that look a bit similar to form a line, but they will not form a picture of whole person care. And when you look at that line, there are holes in between through which patients fall, and duplications where they have to do the same thing over and over again.

To build a picture of whole person care you have to fundamentally change these fragmented services so that they might just fit together.

To achieve that coordinated care staff will need much much more power to transform existing service than they are normally granted.

It won’t surprise blog readers that I think that this greater power comes from patients and tomorrow I will describe how I think that might work.